Every morning, I make your bed.
I pull the sheets up tight, and I arrange the red and blue striped comforter on top. I fold your weighted blanket and tuck it into the bottom of the mattress.
It’s corduroy, your weighted blanket. You don’t like sleeping with it because it’s hot, but it’s a great way to keep the covers in place during your restless nights.
After you climb onto the bus for school, I take my last sip of coffee, and I wander upstairs. I open blinds, and I pick up towels. I throw a load of laundry in the washer.
Then I look over and I see the twisted sheets and the blanket on the floor and I know it’s been yet another night that you’ve tossed and turned. I feel a pinch of sadness in my stomach.
You don’t only feel sadness in your heart, you know. You can also feel it in your stomach.
I make your bed for you even though you are perfectly capable of making it yourself.
You are very capable, in fact. You do a lot for a 15-year old with autism.
You cook, and you bake, and you wash the pan after you scramble the eggs.
You know how to change out a shower curtain, and replace a light bulb, and do laundry.
A long time ago a nice doctor told me that you had Autism Spectrum Disorder. He was wearing a tie. His voice was calm, but firm. He left no room for doubt about this.
It changed me. Because of the doctor with the tie, I had to figure out what really matters.
That’s a weird thing to say, right? How can I say autism matters when it is the very opponent I battle—the court jester who taunts me, the Cheshire cat who smiles wordlessly from around the corner.
Autism matters because it is real, and raw, and permanent. It affects every aspect of my life—more importantly, it affects every aspect of your life.
I have never in my life on this earth met anyone who thinks like you.
No one talks like you.
Sometimes you speak so fast, it’s like the words are piled up in your mind and they bump into each other and jockey for position.
Other times, silence.
To your ear, foreground noise is the same as background noise. You hear the truck rumbling down the street at the same volume as the teacher’s voice in the classroom. Because of this, it’s often hard to keep your attention.
You crave carbohydrates, and cheesy macaroni, and crunchy chips. I’m not sure if this is because of autism, but I’m just going to go ahead and blame it anyway.
Trophies don’t matter.
Grades on a card don’t matter.
Status symbols don’t matter.
Until the doctor and the tie, I thought it all mattered. Now, I know better, and I am better for the knowing.
Fluffy eggs with a lot of cheese matter.
Clean laundry matters.
Every morning, I make your bed.
I make it for you even though I don’t make it for your three brothers or your sister. They make their own.
Oh sure, there used to be grumbling about fairness and all of that.
Fairness has left the building. We know this now.
I mean, you can’t live alongside someone who struggles to make eye contact and has to go to a special school and faces down the wolf of anxiety every single day, and possibly consider the idea of fairness. It is like walking next to someone who broke their leg, and complaining they beat you to the front of the line.
So, I make your bed.
I do other things, of course. I make sure to get your favorite pretzels at the grocery store, and I keep headphones in the car in case we stop at a restaurant and you can’t tolerate the noise.
I don’t do the things I long most to do—I don’t fold you into a big bear hug, or kiss your cheek, or run my fingers through your soft brown hair.
All day long, you shut me out.
You tell me you don’t need me.
You tell me not to touch you, or make you a sandwich, or ask questions about your day.
This how you feel to me.
It’s always been this way, since you were a tiny baby thrashing in my arms. It was as if you wanted to crawl out of your own skin.
I have said it one thousand times before, and yet I will say it again. I want to talk to you.
Please, talk to me.
Tell me what makes you jealous, or elated, or sympathetic, or apprehensive.
People who know lots and lots about autism—who research it and study it and describe it for the rest of us—well, they would argue you don’t experience these feelings.
But I believe you do.
Explain to me the color within your lines of black and white.
I want to hear it all.
I want to hear what you think about global warming, and refugee camps, and whether or not you’d like to see the green, green hills of Ireland.
I will wait for as long as it takes.
In the meantime, I will make your bed.
I will make your bed because, for two minutes every morning, I can forget that living with you sometimes feels like I am living a stranger.
I can forget about the way I yelled at you during dinner because the Cheshire cat was grinning at me from under the table and you wouldn’t stop talking to yourself or scripting from some dumb YouTube video.
I can forget about worrying what will happen to you when I die.
Who will take care of you when I die?
For two minutes of the day, I don’t have to be an advocate, or an autism-explainer, or a social-story-teller.
I’m just a mom, tucking the sheets in tight.
For two minutes, I can do something nice for you.
I am trying, Jack-a-boo.
There is no such thing as fair.